Survivor

The Survivorship Clinic is something I didn't even know existed until about a year ago.  Really it is a "clinic" run by a different doctor within the Hem/Onc clinic that we've been going to for years, same location, same rooms, same memories.  It certainly felt big, monumental even to have reached the time that we would be seen here.  It's these times that I think of our friends who will never be here, I can so clearly see Mia and Rhema's sweet faces.
I don't like new doctors, it's nothing personal, I've just learned that the complexities of a childhood cancer diagnosis, treatment and care are much more than clinical data.  There are reams of paper, reams upon reams that document Georgia's course of treatment, no data though on what a force she is.
As our appointment drew closer I made phone calls, I wanted to prepare Georgia (and myself) for the appointment, what should we expect? I kept leaving this message on various voicemails without any response.  I finally heard back from Georgia's oncologist, she called to answer my questions and also to let me know she was leaving Seattle Children's.  I couldn't believe it, she has literally been with us since day one, she met us in the Emergency Room the day we first heard the word cancer.  No one ever wants to need a pediatric oncologist, but if you do, she is who you want.  She is the perfect balance of honesty, caring and impeccable intelligence and she's a mom which gives her credentials even the most prestigious medical school can't provide.  As I struggled to imagine moving on without her as part of Georgia's care we discussed the upcoming appointment that would include an echo cardiogram.
I tried to prepare Georgia without making it bigger than it needed to be, she looked at me and with a frown on her face said, "mom I don't want to see anymore doctors."  As my heart sank, I did my best to reassure her that we would get through these appointments then have a nice long break... then I promised a lollipop.
The day arrived and we headed to Children's, as we waited to be called back to cardiology I looked around at the clinic names on the plaques beside each doorway, Genetics, been there... Ophthalmology, been there... Orthopedics, been there, Radiology and the Surgery Center, been there and there, way too many times.
Georgia's echo went well, the tech was friendly and walked me through the things she was looking at while Georgia watched Dora.  I felt better when she said that the echo would be read in time for our appointment, Georgia felt better when she had her lollipop in hand.
We headed up to the Hem/Onc Clinic and checked in.  It's hard not to look at the faces coming and going, the bald heads, the tubes, the pain on one girl's face as she was wheeled down the hall.  You can see the question on others faces as they look at Georgia, new or old?
We were finally called back, vitals taken and shown to our room.  The appointment was long, filled with information that left me feeling an incredible amount of sadness.  Part of being seen in the Access (aka Survivorship) Clinic is that you are given a binder filled with information on the chemotherapies, sedation's, and procedures specific to your child, and handouts on all of the possible side effects.  The specific information is important, someday Georgia will take charge of her health care and she will need names and doses of medications to be monitored properly.
I was also given a book titled, 'Childhood Cancer Survivors A Practical Guide to Your Future' I hate books like these, I jokingly said, "Oh, is this our gift with purchase?"  Somehow my humor was lost on our new doctor.  Then, we went through all of it, from head to toe, how her body could be impacted by the treatment she received.  It was a barrage of information that was confusing, other malignancies, scaring of the lungs, decreased bone density, weakening of the heart, "over time the heart muscle can weaken as a result of this specific chemotherapy... this can lead to heart failure."  Wait, what? "Well, the recommendation is that she has an echo every two years until she is 21 then she will likely go to every 3-5 years... if caught in time there can be medication given..."  WAIT, WHAT???  I started asking questions, what percentage would you say... and how much of an increased risk?  The answers just confused me more, 5-10%,  a moderate risk, I'm no mathematician but 5-10% doesn't equal moderate, right?
Well, he said, with an uncomfortable chuckle and smile, "chemotherapy is poison and although it can kill cancer cells it can damage other things."  Thank you, for that reminder sir, I had almost forgotten. I wasn't mad, this doctor is a nice guy, he wasn't being a jerk, we just have different ways of communicating, did I mention I don't like new doctors?  I was desperately trying to read between the lines, he's speaking on data, he only knows Georgia from paper and calculations.  Her diagnosis and treatment are so unique it's hard to have accurate data, and at the end of the day these are possibilities not certainties.  No one has what I want, there is no crystal ball that can tell me everything is going to be okay.
Technically we don't need to be seen again for a year, but to keep lab work consistent we will return to Children's in January for Georgia's four year post transplant work up.  In the meantime, I emailed her (original) oncologist to walk me through the questions that leave tears welling up in my eyes.  Cancer never let's you go, there will always be more fear than the average person, more worries about the unknown.  For now those worries are mine, Georgia is too busy, growing, learning and being so full of life.  So I will do my best to take my daughters lead, I will put my fears aside and live, we are so grateful for the opportunity.

The faces of Georgia as we waited for the doctor to arrive

 What, we're not coming back until 2015?!?!

 Wasting not time, after the appointment we went to the park then daddy built a swing in the backyard.